Saraswathi Subramoney, 78 years old, is the caregiver for her 86-year-old husband who suffers from Parkinsonian dementia. The couple lives in central Bangalore in a well-appointed apartment full of curios gathered over the decades. Their children (they live in other cities) visit often to help and comfort, but Saraswathi is primarily responsible for her husband’s care and has to cope with it alone most of the time. In this interview, she shares the progression of her husband’s condition, her ways of handling care, and her feeling of exhaustion and overwhelm. [note]
Can you describe the events that led to your husband’s diagnosis?
The first indication that something was wrong with my husband came around 3.5 years ago, when he fell down a couple of times. We visited Mumbai soon after, and consulted a senior doctor in a leading hospital there. The doctor assessed my husband, conducted various tests and scans, and finally declared that what happened to my husband was only “old age” (my husband was 83 years old). The doctor showed us the brain scans, pointed out some areas, and said the gaps were caused by “ageing”.
We returned to Bangalore. Over the next few months, my husband’s condition worsened to a point I found very difficult to handle. Examples of the behavior he showed were:
- Losing balance while walking or climbing stairs
- Fits of anger and shouting
- Insisting on going for “work” (though he had retired long ago)
- Insisting on going out for errands that were not needed (such as booking tickets at the railway station)
- Insisting on getting updated bank and FD statements every few days, and wanting to go even on Sundays after I told him that the bank was closed
- Going out alone without telling me, such as slipping out of the apartment when I was in the kitchen
Our family doctor said my husband should not be allowed to drive. I therefore started hiding the car keys. My husband began insisting that the car keys be placed at the same place every day, and would refuse to eat if he couldn’t see the keys. He would shout at me.
I consulted a psychiatrist, who gave no formal diagnosis but started treatment. Eight months later, after it was clear that the medication hadn’t improved my husband’s condition, the psychiatrist recommended that I consult a neurologist. Around this time, my daughter noticed that my husband was leaning to the left while walking and holding his left hand awkwardly.
My husband was able to answer most of the questions asked by the neurologist (those usual what is 100 minus 7 type of questions), and scored seven or eight out of ten. The doctor diagnosed his condition as Parkinson’s, and prescribed medication to be given in addition to the medication already prescribed by the psychiatrist.
We had to go to Mumbai again for some work around then, and so we revisited the doctor we had first consulted. This senior doctor told us, “Stop all medication immediately. When a patient walks into my room I know whether he has Parkinson’s or not. Your husband does not have Parkinson’s”. He told us to continue only one medication, which was for calming my husband.
This became very confusing for us. We therefore consulted doctors in a large, reputed hospital in Bangalore, and they diagnosed my husband’s condition as Parkinsonian dementia. We continued their treatment for eight months. This hospital used a panel of doctors for attending patients, and every visit we would end up meeting a different doctor and have to explain the case again–this new doctor would either prescribe something new, or continue the old medication. I was unhappy with this arrangement as I felt it did not give us continuity. A senior doctor I shared this with advised me to switch to treatment under the local specialist who was closer to my house.
The symptoms my husband was showing at the time he was diagnosed formally were:
- Poor balance and frequent falling
- Wandering without telling
- Often, he would fall and be brought back by neighbours
We are, since then, continuing treatment under care of this specialist.
What was your reaction to the diagnosis?
I found it unsettling that doctors came up with different answers, especially the Mumbai doctor’s insistence that this was just ageing and his emphatic way of telling us this was not Parkinson’s.
When the diagnosis was finally clear enough, I was deeply affected.
Till then I had heard of many diseases like hypertension, diabetes, stroke, but I had never heard of dementia. I tried to be strong enough to do what was needed, but when I was told that there was no cure, I felt mentally and physically down.
The doctors gave me information on care for my husband, but did not fully explain what to expect. They did not counsel me on my own stress management or how I could stay healthy as a caregiver. I myself am old and have health problems that have become worse with the amount of work and stress I am facing. I do not know what to do about these.
What is your husband’s current state?
My husband has become very weak and lost weight. His ability to understand and do things has deteriorated a lot. He is usually on a wheelchair and needs help to be moved from and to the bed. He needs to be helped for everything. He does not seem to know me or any of the things in the apartment. He does not really know who I am.
It is like he is not there for me. He is like a living doll.
What is your current arrangement for caring for your husband?
Though my children do not live in Bangalore, they have set up a “pukka” system to help me care for my husband.
Currently, I use the services of a day attendant, a night attendant, and a dementia day care centre.
The day attendant arrives at eight a.m. in the morning. The night attendant (who has been there since the previous night) leaves after the arrival of this day attendant. The day attendant cleans and bathes my husband, and gives him his breakfast and medication. Around 9:30 am, the vehicle from the dementia day care comes to pick up my husband, and my husband then spends his day at the dementia day care (six days of the week). He is brought back at 4:30 pm by the day care vehicle, and the day attendant attends to him till six, and then leaves.
The night attendant arrives at eight pm and takes over care.
For these two hours, from 6pm to 8pm, I have to handle the caregiving myself. This is extremely difficult because I cannot physically do anything for my husband. For example, I cannot push the wheelchair or lift my husband from the chair to the bed or vice versa. I am very scared of risking anything, because if I get injured, who will take care of me and my husband?
Sometimes I manage to make the day attendant stay for some extra time by paying him “overtime”, but he does not always agree because he has other tasks to do.
I have considered using a full-time attendant, but am hesitant because that would mean cooking for the attendant and that can also be a problem.
How satisfactory are the services you use?
The availability of the dementia day care centre is a very big relief, because for those hours the centre’s staff takes over both the work and the responsibility.
At home, I definitely cannot do anything without the attendants. The work involved is very tiring physically, and on the days that the agency sends a female attendant for the night shift, we face a problem because she finds it difficult to lift and move my husband around.
The two hours every evening when there is no attendant are also extremely stressful for me, given my age and frailty.
There is one more problem; our apartment is full of a lot of things. My husband used to be very fond of buying curios and he decorated our port-retirement apartment with them–of course, they mean nothing to him now. Sometimes I find some items missing. I do not know which attendant took them, and have no way to prevent such thefts. That my things are getting stolen and I can do nothing about it frightens me and makes me sad. I find it stressful. I have moved my jewelry and other precious belongings to bank lockers, and use cheques for most payments, but I have to keep cash at home for emergencies, and am scared of theft.
As you are living alone with your husband, you must also be handling other work and responsibilities?
Yes, I handle all the work required to manage our house and our finances.
Earlier, when my husband was alert and active, he handled the bank and investment work, and paying bills and all such errands and responsibilities. Now I have learned about all these things. I make the bill payments, get bank passbooks updated, and reconcile statements and do all such work.
I also manage the house, which means doing the shopping and cooking and other house work. I cannot sit back and relax, because I am responsible for everything.
This is a lot of work to do in addition to caring for your husband. At 78 years, frail, and suffering from medical conditions (diabetes, hypertension), this can be very stressful. You also seem to have lost weight over the last few months. Can you tell us about your emotional state?
It is true that I have lost weight–over the last six or eight months, I have lost six kilos. My BP and sugar levels are also worse, and I think it is because of all the work and the tension.
While I am managing to do whatever is needed, I feel very tired and am not sure how long I can keep doing everything. My children comfort me and tell me I must take care of myself. . They are trying to see how they can take turns to come here so that I can have more days to relax.
Another reason I get stressed is that I am scared that something may happen to me. Suppose I fall down in the flat or fall ill? My husband will not even know anything. My children live in other cities; I have to depend on neighbours to call them. But who will know if something happens to me? How will they know? Yet I am also scared of having a full-time attendant living with me. That will mean cooking for the attendant, and I do not want that work to get added to what I am already doing.
My husband’s state will get worse. I am not able to think clearly about how I will manage that. I do not know what I will do. I hope my children manage to come up with a solution. Right now, I am just somehow continuing to manage my responsibilities.
Thank you for opening your heart to us, Saraswathi!
Note: This is a personal interview. The situation and experiences described are specific to the interviewee, and the interview is not intended to be seen as a general representation of dementia patients, the families, the care environment, or professionals. Every patient, every family is different and so is their experience.